"I thought I was just cold. Now I face amputation"

It started with the hair-dryer on my feet. Friends called me a wuss for complaining about my freezing feet: like two ice blocks, even in summer.

Photos: Sarah Fenwick/Supplied

It started with the hair-dryer on my feet, as a way to thaw out my bitterly cold fingers and toes.

Friends called me a wuss for complaining about my freezing feet: like two ice blocks, even in summer. When they saw the hairdryer trick, they finally took me seriously.

Admittedly, I felt ridiculous responding to the doctor’s enquiry of what seems to be the problem: my feet are cold!

Turns out, it’s not so pathetic and has a name: Raynaud’s phenomenon. Over two million Australians could have it - many as yet undiagnosed. It generally runs in families - and affects more women than men, even though I fall into the latter category, and have long struggled with this condition.

Here, some other sufferers share their story of the darker side of the winter blues.

The ‘I’m cold’ disease

Raynaud’s is caused by poor blood flow to your extremities: often hands; sometimes feet. This can lead to numb, blue or white skin and red, sometimes painful skin as blood returns. Mostly it means you really, really feel the cold in your hands/feet and find it almost impossible to warm them. There’s no known cure.

The real winter blues

For suffers like nutritionist Samantha Gemmell, 27, from Croydon, VIC, the winter blues aren’t just in your head; they’re deep in your fingers and toes: “Winter’s less than pleasant. I'll often avoid socialising, particularly at night. Thermal fingerless gloves live in my handbag.”

It can take over your life: blogger Sarah Fenwick-Mulcahy (pictured), 38, from Kotara, NSW, was only diagnosed at 31: “I’d felt the cold much more than my peers all through my teens but felt silly approaching doctors about my odd symptoms. My GP was persistent, running many tests until we had a diagnosis.”

Winter equals agony and hibernation: “My hands are always painful, especially the tips of my fingers. Everything aches from the wrist down! I take medication for the pain every day. Friends know I suffer from unfortunate symptoms. If plans don’t suit my health, I simply don’t join in. I do miss out on some things because of my health, but it’s just part of our lives.”

We don’t know how many have it

Dr Ryan Harvey, Assistant Medical Director at House Call Doctor, says: “We know 1-3% present for treatment, but estimates indicate 5-10% may experience Raynaud’s phenomenon. Many sufferers go undiagnosed or untreated.” Compounding this, according to a study by Sclerodrema UK, one in five patients were too embarrassed to admit they had it.

It can lead to gangrene and amputation

Despite there being no cure, not managing symptoms can be dangerous. Dr Harvey said: “Raynaud’s phenomenon may be a symptom of auto-immune or connective tissue disorders. If undiagnosed they can result in loss of digits, limbs and shortened life spans. In fact, I’ve seen one case of Raynaud’s phenomenon (associated with Buerger’s disease) where it was necessary to perform amputation of a finger.”

The serious side worries Sarah Fenwick-Mulcahy. After going to the doctor about her acute coldness, it was discovered her Raynaud’s is part of an autoimmune disorder called CREST syndrome (the ‘R’ represents Raynaud’s). It’s a degenerative disease: “I am concerned, as my condition has no treatments, only medications to help control symptoms. As a mother to two boys, it’s hard to cope with the thought that I’ll deteriorate, and my husband and children will witness that. Care for the boys will shift more and more to my husband.”

Coping techniques

Electric blankets and thermals are your friends. My own doctor was blunt: There are two ways to manage it, she told me: put freezing water on my feet (boosting circulation) - or move to a warmer climate. I chose the latter, moving from London to Sydney.

For Sarah, Aussie humour is one of the best coping devices: “My freezing hands are a source of much amusement in my household - my sons and husband call them "corpse hands" or "zombie hands." I take every opportunity to try to warm my hands on them, shocking my boys through my touch on their bare skin!”